[KimberlyOnline Facilitator June 24, 2013 at 2:04 pm Post count: 4294]

#1173633

@AzGravesGuy – Many thanks for the update…so glad to hear that you are in a good place in terms of health and work issues.

I’m so sorry to hear about your friend. The fact that she would take the time for a “tour” to say proper goodbyes to all who have been important in her life truly speaks volumes about her – a and the relationships she has forged in this short life.

Your comments about becoming more flexible with diet reminded me of an interview I read with tennis player Venus Williams, who has Sjogren’s Syndrome (also an autoimmune disease). She calls herself a “chegan” – a vegan who cheats. She said that if there’s something on your plate that she’s not supposed to have and you turn your head, it might be gone!

The endo shortage is definitely frustrating. Sometimes a primary care doc can help you cut through the red tape and the long waiting periods.

Wishing you all the best – please continue to keep us updated!

[AzGravesGuy August 24, 2013 at 5:00 pm Post count: 160]

#1173634

Hey everyone!

Thank you for your words and pm’s of support. I appreciate all of you coming along on my experience.

I have an update.

Latest labs: FT3 is 3.0 (2.0-4.
FT4 is 1.0 (.8-1.7)
TSH is still < .01 (.45-4.5) So, I am running a bit more hyper than I was in June, but still feeling great.
I am still on Methimazole 5mg every night and off the Atenolol completely.

This 2 jobs thing almost broke me a few weeks ago, but I got over the stress aspect of it by:

1. Meditating morning and night for at least 20 minutes at a time.

2. Realizing that without facing challenges head on, I will never achieve my goals; whether it be in work or health. So I stopped complaining and started doing.

3. I stopped being afraid of tomorrow. The “what if” machine in my head has been silenced, I hope for good. Learning to relax completely has helped me without a doubt. It stopped the nightmares too.

As great as all of this sounds, there are still day to day pressures and stresses that at some moments bring me to high levels of frustration. ( I am not a robot unfortunately. If I was, I would have been recalled and discontinued a long time ago. Lol! ) But at the end of the day, I leave all of it at work where it belongs and once I meditate to decompress, it is the LAST thing on my mind. I take that back, it is not on my mind. Period.

My eyes have calmed down. My weight has started a slow creep skyward. I am up 10 pounds since my last post in June. Well, I think it’s slow considering it will soon be a year since my failed RAI. Still being 40lbs lighter than I was then is good enough for me! (I blame Raw avocado chocolate pudding…google the recipe and enjoy! I have been eating a lot of it since avocados are in season. “Good fat” or not, it is still fat. It’s awesome though, especially when it is 110 outside and I want something cold, creamy, and chocolate. A bowl of that with some iced coconut water and I can conquer the world….or at least my back yard.)

I have spent a good part of today catching up on all the surgical posts and experiences. It has left me very excited and optimistic about the future.

Thank you everyone for posting. Hopefully I can follow in your complication free footsteps when the time comes.

To all of you reading this, I wish you the best of health and the ability to find some peace and happiness while battling this monster we share.

Rob

[sharon01 August 25, 2013 at 4:49 am Post count: 6]

#1173635

I can relate to the anxiety and depression, diagnosed with graves last march, have thyroid removed in april, anxiety levels off the wall, blood work comes back ‘ok’ trying to get apt. with good physch doc to help with meds, but have to wait a month to get in…… does anyone else have these feelings of anxiety and depression, seeing surgeon, waiting for orbital decompression surgery sometime in fall, antibibodies are still elevated,,,,, this is an awful disease,,,,,

[SueAndHerZoo August 25, 2013 at 8:56 am Post count: 439]

#1173636

Hi Rob…. thanks for posting an update. Congrats on learning how to feel good in spite of all the challenges; I often wonder how much of this awful disease is caused by the bodily disruption and how much is caused (or worsened) by what it does to our psyche.

I too suffer with an extreme case of the “what if’s” and have had it all my life, even before Graves, and am constantly working on how to conquer that. I have short periods where I’m really successful and totally embrace the present moment, but most of the time I slip back into my old habits.

Thanks for the reminder that I CAN do something to modify the way I feel – I don’t have to feel powerless over what diseases do to me, I can work around them and with them.

I truly hope peace and happiness are permanent (or at least frequent) factors in your life.

[sharon01 August 25, 2013 at 12:44 pm Post count: 6]

#1173637

I also have graves, had total tyroid removed in April, have been on predisone two separate times since February, down to 10mg a day, take Xanax, Lexapro, and seraquil, for nerves and anxiety, nothing is helping,,,,, I don’t understand how the docs can say it does not effect you emotionally, I am a total nervous wreck, and it gets worse every day, cannot get apt with dr’s for at least a month to go over meds…..feel like I am coming out of my skin….everyone says it’s just nerves, but I feel like I have no control over this…feel like I’m loosing my mind, and feel so alone….

[SueAndHerZoo August 25, 2013 at 2:24 pm Post count: 439]

#1173638

sharon01 wrote:

I also have graves, had total tyroid removed in April, have been on predisone two separate times since February, down to 10mg a day, take Xanax, Lexapro, and seraquil, for nerves and anxiety, nothing is helping,,,,, I don’t understand how the docs can say it does not effect you emotionally, I am a total nervous wreck, and it gets worse every day, cannot get apt with dr’s for at least a month to go over meds…..feel like I am coming out of my skin….everyone says it’s just nerves, but I feel like I have no control over this…feel like I’m loosing my mind, and feel so alone….

Hi Sharon. Did you have the anxiety before Graves or is it just since? Also, you should probably start a separate thread about this so we don’t hijack Rob’s thread.
Sue

[KimberlyOnline Facilitator August 26, 2013 at 9:19 am Post count: 4294]

#1173639

@AzGravesGuy – Thanks for stopping by with an update! It’s funny how when we get totally crunched for time, self-care activities like meditation are commonly the first to get thrown out the window. And yet, when we *make* the time for those activities, the investment is almost always worth it! Wishing you all the best!

[Raspberry August 26, 2013 at 12:52 pm Post count: 273]

#1173640

Awesome AZGravesGuy! So great to hear you are doing well and the meditation sounds like it is making a profound difference for you. I practice some but inconsistently, you’ve inspired me to get back to it!

[ibminlou2 September 3, 2013 at 6:55 pm Post count: 21]

#1173641

Hi Azgravesguy,

Did you finally get your TT?? Feel free to point me to the correct thread if I should be looking elsewhere for an update. I am one week post TT and am still figuring out the new “Normal”, though I suspect none of us on this forum consider our selves to ever feel like that.

Thank you for sharing all of your experience and hope you are well.

[AzGravesGuy September 21, 2013 at 9:39 am Post count: 160]

#1173642

So yesterday at “nameless financial institution” more than half of my department was called into conference room B and advised that as of November 1st, we would all be cut down to 29 hours a week and will be losing our health insurance coverage December 1st.

Some people got angry, some cried. Some stormed out and shouted profanities as they immediately boxed up their desks and walked off the job.

I sat there with the same indifference I approach every day with. Lol! Now I am debating giving notice as the insurance was the only reason I started working there.

So…..my TT has been placed on indefinite hold. I am actually ok with that as right now I am in a really good place symptom wise and almost think a TT would be throwing a wrench into my progress. I feel good, my eyes have retracted slightly and I am having more good days than bad.

(5 mg methimazole once a day, no beta blockers anymore, meditating 2x a day to maintain a peaceful focused mind)

What few bad days I have had have been caused by external things beyond my control.

My MD is now refusing to order me any labwork citing liability concerns, instead referring me to see an endo from here on out. I told his assistant to try to get me in somewhere this year and she laughed. I agreed with her laughter and told her I have been trying to get into one since May. She wished me good luck.

I am still on the cancellation lists of 2 better reviewed area endos so who ever calls first gets my business. Hopefully I will get a call before December. If not, what can I do?
More importantly, if not, why do I care? I feel good, have another 8 months of meds, and can still use the cash lab to check my levels. As long as I am seen before the 8 months is out, I refuse to stress over losing my coverage.

I have now gained 20lbs, 10lbs in the last month alone. It isn’t the avocados! Lol! I am still eating an extremely conservative Raw Vegan Anti-Inflammatory diet and walking every day.

It looks like I am bloating. It isn’t just weight around the midsection, it is everywhere. (Neck, face, ankles, weird places….like I am slowly inflating.) This concerns me as I don’t have the “clown pants” discussed in previous posts anymore. So, I will be mentioning this new occurrence when I make my 2 weekly endo calls on Monday, before I turn into a marshmallow.

Mind over matter. Even if I do end up turning into a pumpkin, I feel good.

I will update if/when anything remarkable happens.

[Raspberry September 22, 2013 at 12:02 pm Post count: 273]

#1173643

Hi AZGravesGuy! So sorry to hear about the loss of insurance – I wonder if the Obamacare laws coming into effect in 2014 will be able to help you? I know that a lot is supposed to change just not sure what. I’m glad you are feeling great symptom-wise, but if you are puffing up like a marshmallow odds are you are trending hypo better to nip that in the bud. Maybe if those endo offices knew you were about to lose your insurance they would get you in faster?

[KimberlyOnline Facilitator September 23, 2013 at 10:25 am Post count: 4294]

#1173644

Wow, so sorry to hear about this latest development, ESPECIALLY since you took this job specifically for the insurance! As Raspberry mentioned, the law that goes into effect in 2014 might give you some better options. Open enrollment under the Affordable Care Act starts on October 1st. I have an individual insurance policy – but it won’t cover anything Graves’/thyroid related, so I am definitely going to see if I can get a better deal on the new marketplace:

(Note on links: if you click directly on the following link, you will need to use your browser’s “back” button to return to the boards after viewing, or you will have to log back in to the forum. As an alternative, you can right-click the link and open it in a new tab or new window).

https://www.healthcare.gov/

As usual, you are handling life’s curveballs with grace and humor…wishing you all the best as this crazy journey continues.

[jimmer1960 September 25, 2013 at 12:48 am Post count: 7]

#1173645

I can not imagine doing this for 6 years! I have been thru it for maybe 6 months and got the iodine ablation pill sept. 11. maybe this is why the doc that gave me the pill was impressed I got this done so quickly. the feeling like you want to jump out of your skin every waking moment is just too, too much. I am a 53 year old man and am interested in how this works for you also. that methimazole did nothing for me. I was taking 60 mil a day.

[AzGravesGuy September 26, 2013 at 7:20 pm Post count: 160]

#1173646

I actually checked my records, August 28th made it 8 years since diagnosis! How the time flies when you are not having fun.

Jimmer, welcome to the forum! I hope your RAI does the trick and you move easily into the supplementation phase of Graves’. If you weren’t responding to the methimazole, then RAI was a reasonable next step.
It’s always cool to see other Arizonans on the board. If you are ever inclined to make the drive, we have a good support group in Scottsdale.

Today HR said they will be issuing an email about the new insurance marketplace that is opening up and apparently they will cover “a portion” of the cost for their newly part time employees, so all hope is not lost. The backlash on the cuts has been pretty severe so I believe this is damage control that was not originally planned for.

Raspberry, I wondered if I was going hypo as well with the puffiness, but that is the only symptom. I am still at most times, running a little hot. I am getting bloodwork done Saturday at the cash lab (with HSA money, use it before I lose it. Lol!) so I will know next week for sure.

Endo scheduled for October 23rd! Thanks cancellation list! It is NOT my first or even sixth doctor of choice, but the luxury of being choosy has been replaced with a countdown to loss of benefits. This endo is poorly reviewed online (1.8 out of 5 stars due to demeanor) but she CANNOT be as awful as the one I saw before. All I need from her is someone to write the methimazole script or make the referral for surgery. I am not looking for “personality or bedside manner” anymore, this is all about getting the job done. This is now a business transaction.

Kimberly, yes this has been a disappointment but I have to roll with the punches in life if I want to get anything accomplished. I wish I had learned that lesson a decade ago. Hopefully we can both find a better offer with the new opportunities on October 1st.

Until then, my mantra:
Learn to laugh at Graves’ and get your life back. You have it, it doesn’t have you.

[KimberlyOnline Facilitator September 27, 2013 at 12:03 pm Post count: 4294]

#1173647

AzGravesGuy wrote:

Until then, my mantra:
Learn to laugh at Graves’ and get your life back. You have it, it doesn’t have you.

A great reminder for all of us!

Sometimes I just have to roll my eyes at Corporate America…*none* of the execs saw a potential backlash coming from dropping everyone’s insurance? Glad that you will hopefully be getting some financial relief on a new policy, though!

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